tag:blogger.com,1999:blog-3605254543761446258.post9066742071720547588..comments2017-12-13T09:58:12.972-05:00Comments on Wheelchair Kamikaze: Ocrevus: Former Genentech Researcher Speaks OutThe Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.comBlogger22125tag:blogger.com,1999:blog-3605254543761446258.post-66438258245469203702017-07-03T00:23:23.309-04:002017-07-03T00:23:23.309-04:00Something is definitely wrong here. As anyone who...Something is definitely wrong here. As anyone who takes any of the MS specialty meds knows, these drugs are astronomically priced and if you are on private insurance and your drugs aren&#39;t covered, them you can qualify financial assistance from the drugs&#39; manufacturers where you can receive the drugs free or for a very low co-pay. However, if you are disabled or have reached Medicare age, and are therefore on a government-assisted health plan such as Medicare Part D, you cannot get the financial assistance from the drug companies offered to privately insured patients because of the anti-kickback provision of the Social Security Act, which governs Medicare. This provision was enacted to prevent doctors from taking financial inducements from Big Pharma to prescribe their meds for the doctors&#39; patients. But yet that seems to be exactly what is going on. If the letter of the law were being followed, no doctor should be able to prescribe a medication the manufacturer of which is providing the doctor with payments. So why are we, the patients, prohibited from receiving the financial assistance which Big Pharma is willing to provide by the same statute that prohibits doctors from taking moneys from these manufacturers and then prescribing the same drugs to their patients????? Something is rotten in Congress--again.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-59955443461967159742017-07-03T00:12:59.435-04:002017-07-03T00:12:59.435-04:00I am shocked to be reading this. As any of us on ...I am shocked to be reading this. As any of us on an MS DMT which includes all of these specialty drugs or an MS relapse specialty drug knows, these meds are extraordinarily expensive. That is one reason why I am so disturbed about the Rituxan/Ocrevus research history. For those of us on a government-assisted health plan, such as Part D Medicare, because of the anti-kickback provision of of the Social Security Act, we are prohibited from participating in any of these drug manufacturers&#39; free or reduced cost drug programs, and are thus left with astronomical co-pays and co-insurances to pay for these drugs. Most of these are unaffordable and thus disabled persons, especially, often can&#39;t afford their meds. The anti-kickback provision is interpreted very broadly by the courts, and is meant to reduce Medicare fraud by, for example, not allowing drug companies to pay doctors as an inducement to have them prescribe certain medications made by the donor manufacturer. Why then are these doctors allowed to accept moneys from Big Pharma and not be in violation of the anti-kickback provision even if they prescribe the very drugs which one would think would violate the provision, while we, the patients, aren&#39;t allowed to get direct financial assistance to defray the astronomical expense of these drugs? Something seems rotten in Washington...Susan Dolinhttps://www.blogger.com/profile/08675969442821240346noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-11162628286558143922017-06-22T04:22:06.656-04:002017-06-22T04:22:06.656-04:00I haven&#39;t heard anything about a limited suppl...I haven&#39;t heard anything about a limited supply of the drug, but it wouldn&#39;t surprise me if RRMS patients are being prioritized, since they are the much bigger population (meaning more money for the pharmaceutical company). It is a new drug, and I&#39;m sure production has to be ramped up. In the meantime, Rituxan is available, as long as your doctor can get your insurance company to pay for it. Has a very similar mechanism of action, and may actually be safer.The Wheelchair Kamikazehttps://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-1438003248178477132017-06-21T17:04:12.020-04:002017-06-21T17:04:12.020-04:00Appreciate and respect your blogs and knowledge. I...Appreciate and respect your blogs and knowledge. I am anxious to give Ovrevus a try understanding cautions and limited positive results for someone who has always had a more progressive form, never relapsing/remitting, for 31 years. I am deteriorating faster non the less and and have never had access to disease modifying meds due to my form and having RA as well (trials won&#39;t take me). I have worried before FDA approval about how Big Pharma would further restrict access should a drug like this get approval. Am hearing limited availability, only going to big name facilities, only going to RR patients first, etc. My MS doc says I&#39;m a good candidate. My insurance has approved it and the MS hospital has an established protocol for administration, but still can&#39;t get them to commit to setting it up. Something seems fishy. And nurse-asst. let it slip that 2 folks have received it but thats all. Another nurse in another office who has MS told me she&#39;s hearing limited availability. Heard anything about this?<br /> Unknownhttps://www.blogger.com/profile/11266947767529510150noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-13660600917933626042017-05-04T02:43:41.338-04:002017-05-04T02:43:41.338-04:00Holy %}*{^€! The neurologist that runs my MS clin...Holy %}*{^€! The neurologist that runs my MS clinic took a half a million dollars in this time period! I don&#39;t see him but his colleague who took a &quot;mere&quot; $47,000. Sigh. Remyhttps://www.blogger.com/profile/00925108689685017053noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-25329329635930018712017-04-21T14:52:25.553-04:002017-04-21T14:52:25.553-04:00After fighting MS for 45 years I woke up to ...After fighting MS for 45 years I woke up to lots many years ago and thankfully never taken MS drugs unlike others who have who live near me who are no longer here today sadly.Lynne Healhttps://www.blogger.com/profile/13932647784833428210noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-46494652310041029502017-04-10T11:57:47.748-04:002017-04-10T11:57:47.748-04:00Big blog , Implacable Lucidity Zone!!!Big blog , Implacable Lucidity Zone!!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-43007368854255318392017-04-08T23:25:55.165-04:002017-04-08T23:25:55.165-04:00I&#39;ve been on a first-line DMT for years. While...I&#39;ve been on a first-line DMT for years. While I&#39;m not thankful for the risks/worries/side effects, I am very thankful that for now my disease course appears to have stabilized. (Despite the fact that I had rarely taken a medication other than the occasional tablet of aspirin, I started a DMT after a first CIS.)<br /><br />I&#39;m well aware that anything can happen, and I hate the hype that &quot;teaches&quot; the general public that most patients aren&#39;t all that ill (just take a pill). I trust my neurologist (a specialist) and he is below $50 on the Doctors for Dollars list. He never pushes one course of treatment over another, and of course some of his patients choose not to pursue treatment of any kind. He freely admits just how unpredictable this horrible disease is, so every time breaking news about supposedly better MS drugs make headlines, I&#39;m left wondering what to do. I know that we&#39;re all different, and that my disease course may not have been affected by my use of an older DMT. I don&#39;t want to change up to something that will pose more risks and problems, though, so I just feel stuck (no needle pun intended). <br /><br />Marc, thank you so very much for your well-researched and insightful blog. You are greatly deserving of your many awards, honors, and accomplishments. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-20984598772864356272017-04-08T19:49:16.972-04:002017-04-08T19:49:16.972-04:00I&#39;ve watched this drug for quite a while now a...I&#39;ve watched this drug for quite a while now and I&#39;m surprised to find that since it has been approved it has become the future treatment of MS and identified as nothing short of a miracle in the media. Did I miss some data along the way because that is not what the data revealed during the clinical trials. I am currently struggling between Ocrevus (now recommended by my Neurologist, but initially he was skeptical) HSCT in Russia (not recommended by Neurologist, but small data samples are compelling), or nothing at all, which may still offer the best risk/reward scenario. I found the new UCONN stem cell research very interesting and I believe that this patient specific targeted treatment may hold the key to future PPMS treatment. <br />http://today.uconn.edu/2017/03/sick-stem-cells-point-to-better-ms-drugs/Kenneth Bloomhttps://www.blogger.com/profile/08740219174617810476noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-50357804565718919372017-04-07T20:39:57.784-04:002017-04-07T20:39:57.784-04:00Interesting commentary Marc. Why should Ocrelizum...Interesting commentary Marc. Why should Ocrelizumab/Ocrevus be any different in the media hype it gets than any other &quot;amazing&quot; MS drug that has been approved over the years. It&#39;s so much about marketing and profits and there are no exceptions to this. However, my neuro (who is not in America) did say to me a couple of weeks ago when I saw him that he has had quite a number of patients on the drug as one of the overseas arms of the clinical trials for around 8 years now, and he is so far quite impressed with the positives far outweighing the negatives. He has suggested I consider the drug when it eventually gets approved in my country, and that is a decision I will make when that happens, and I can weigh up the evidence for myself. I will say that this neuro is not an old school conservative who is addicted to Rebif and it&#39;s ilk, but a very well respected MS expert who also endorses LDN and Biotin if the patient is experiencing positive outcomes - even if those are only from a placebo effect. Having had to put up with neurologists who have a second qualification in &quot;not listening&quot;, I have found this man to be a complete breath of fresh air, and will give his opinions the open-minded consideration I feel they deserve.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-24459900453784536732017-04-07T11:28:05.049-04:002017-04-07T11:28:05.049-04:00Marc, we were part of a panel for ppms in chicago,...Marc, we were part of a panel for ppms in chicago, about this drug. A reality of thirteen people with ppms on panel, Genetech team, presenters, and wanting a better drug, but the hype may be more than reality. 12% efficiency rate, with mega side effects. Graphs shown different ways to make it look better. Interesting note was anybody who had stopped their DMT were in wheelchair&#39;s, those still on a DMT were canes, walkers, or similar. Ampyra was same drug everyone was on. Nobody from Trial to speak there of how good drug was. Know my brother was on Rituxamb for part of non hodgens chemo therapy, with that patent expiring. So same drug, new name. Company was non specific on any questions. Will this help? Or quality of life be worse? <br />Enjoy your postings, and you were mentioned at panel.Joeyhttps://www.blogger.com/profile/14255371706780131741noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-40345013138317282652017-04-07T10:38:17.002-04:002017-04-07T10:38:17.002-04:00The only neurologist that is listed as a MS specia...The only neurologist that is listed as a MS specialist in my area and recommended by the National MS Society hadst received 788 thousand from pharmaceutical companies. I considered seeing him a few years ago because he is an author of several articles but decided otherwise.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-6663843278211840692017-04-07T00:23:24.304-04:002017-04-07T00:23:24.304-04:00Marc, I SO appreciate your comments on this drug a...Marc, I SO appreciate your comments on this drug and others. You have always impressed me with your research and assessments of everything about and surrounding MS. Thank you.Linda La Rowenoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-5485589537992803762017-04-05T18:27:50.010-04:002017-04-05T18:27:50.010-04:00&quot;Interesting&quot; how cynical the drug busi...&quot;Interesting&quot; how cynical the drug business really is, illustrated by Rituxan (Rituximab) versus Ocrevus (Ocrelizumab) ... very depressing.<br /><br /><br />‘Fake breakthrough, fake news:’ One physician-researcher’s takeaway on news coverage of MS drug Ocrevus<br /><br />http://www.healthnewsreview.org/2017/04/fake-breakthrough-fake-news-one-physician-researchers-takeaway-news-coverage-ms-drug-ocrevus/<br /><br />ElizaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-37850298102334511212017-04-05T18:26:40.823-04:002017-04-05T18:26:40.823-04:00Thank you Marc!!
Thank you Marc!!<br />RoxAnne Chesebrohttps://www.blogger.com/profile/14967779994461571460noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-70722674150104620262017-04-05T18:13:56.960-04:002017-04-05T18:13:56.960-04:00BingoBingoAllie Nortonhttps://www.blogger.com/profile/05852839030966183119noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-91152032505568216132017-04-05T14:25:08.293-04:002017-04-05T14:25:08.293-04:00Marc, As usual your information is to the point, c...Marc, As usual your information is to the point, clear and invaluable to those with MS who live in a dark, confusing world.<br />I would like to add my son&#39;s story in regard to the Baclofen Pump. His example is pertinent because it is again about &quot;hype&quot;, subterfuge and outright disregard for people. In 2008, the FDA KNEW that the Baclofen Pump design was flawed. He had it put in with great distress in 2011. It, of course, failed and he had three surgeries because of the failure. It is all in his blog, TheGreekfromDetroit. Just a few years ago, the FDA finally revealed that the flawed pump shoud no longer be implanted as designed. Just a little too late for George!!<br />So, folks, read the small print long and hard, and be suspicious of &quot;too good to be true&quot;. <br />Good work, Mark, in keeping it honest but profit always wins.<br />Hildaxaidw Bhttps://www.blogger.com/profile/01207871010525249029noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-18292359572863369742017-04-05T13:55:44.031-04:002017-04-05T13:55:44.031-04:00WOW Marc! As always, well written article... the i...WOW Marc! As always, well written article... the importance of reviewing all the available information with the doctor cannot be overstated. <br /><br />Too bad we do not have the Dollars for Docs web site here in Canada :(( , it would be interesting to see ... <br /><br />Thank you for the greatest blog you so diligently maintain. Draganahttps://www.blogger.com/profile/00234271869065353850noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-4734493450605483282017-04-05T12:55:59.059-04:002017-04-05T12:55:59.059-04:00You continue to provide a valuable, patient friend...You continue to provide a valuable, patient friendly opinion about MS medical news. In the flurry of coverage about Ocrevus, it&#39;s wonderful to have your perspective. Keep up the good work.Melindahttps://www.blogger.com/profile/04059069463814983523noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-49421251147112036882017-04-05T12:06:33.129-04:002017-04-05T12:06:33.129-04:00This is the information I wanted. Thank you yet ag...This is the information I wanted. Thank you yet again for keeping these things in the light.Daphnehttps://www.blogger.com/profile/04288252573592770860noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-15055680287041145842017-04-05T09:25:29.364-04:002017-04-05T09:25:29.364-04:00Marc ... thanks for the compliment regarding our (...Marc ... thanks for the compliment regarding our (HealthNewsReview.org) recent story about Ocrevus (by Joy Victory). I do multimedia with the team and we&#39;re launching a podcast series in which we explore certain diseases from the triple perspective of a patient, a healthcare provider, and a journalist. We&#39;d like to do MS and are wondering if you would be willing to share your thoughts from the patient perspective? If so, please email me at: mlmjoyce@umn.edu ... thanks, Michaelmlm Joycehttps://www.blogger.com/profile/17507713415347459069noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-7533696731733992812017-04-04T23:58:47.228-04:002017-04-04T23:58:47.228-04:00Great work Marc! Thanks.Great work Marc! Thanks.Marc Fentonhttps://www.blogger.com/profile/05420009859741288071noreply@blogger.com